Autism and Treatments – How to Decide What to Try

Autism Treatments

I was asked recently if I had considered trying marijuana oil for my kids – just to see if it would help their autism.  Truly, I hadn’t even thought about it.  I know it can help so many medical issues (and I do believe the people that need it should be able to get it) but it never occurred to me to give it to the kids to help with their autism.

I don’t know if any studies have been done about the use of medical marijuana for autism and I haven’t talked to any parents who have tried it.  I do follow a few Facebook pages where parents have tried and they say it has helped their child – maybe not with the “autism” but with the affects of it, such as anxiety and trouble sleeping.  And really, that’s what you want a treatment to do – help your child.  Autism can’t be cured, but if you can help your child sleep or relieve some of the symptoms, I’d call it a success.

So that brings up a question – how far should parents go to try a new treatment for their child?

I’m not an expert on this – I firmly believe that every family  needs to make their own decisions about treatments.  They need to talk to their child’s doctor – and maybe a few other doctors.  Every person with autism is different and what works for one won’t necessarily work for another.  I know this first hand!

Both Casey and Rob had standard therapies – speech and occupational therapy.  They had sessions all through school and I took them to private speech therapy.  Rob did better with the traditional speech therapy than Casey did, but it helped them both tremendously.  They both have excellent fine motor skills in some ways (drawing and dressing themselves, for example) but only Casey can tie her shoes.  After 20 years of trying to teach Rob, I decided it wasn’t worth my time anymore.  He had no interest and his fingers just wouldn’t do what they needed to do.  (I knotted his shoe strings and he just slipped them on.  I purchased no-tie laces for him last month and they seem to work well).

When Casey was 5, Auditory Integration Therapy was the rage.  Anyone with issues with their hearing was trying it.  And I wanted Casey to have it desperately.  Basically, the child had to wear headphones for 30 minutes twice a day and listen to music that was altered so their ears would lose the sensitivity and allow them to hear better.  It was only performed in a few places across the country, but luckily, there was an office only three hours from home.

It was also expensive.  And insurance, of course, would not consider covering it.  Along with the therapy itself, we would have to pay for two weeks in a hotel (the therapy was 5 days a week, twice a day, for two weeks) plus food.  But, I just knew it would help her.  My gut told me it would.

I discussed it with Casey’s preschool teachers and they felt it was worth a try, too, as did her doctors.  The cost was still a problem.  I had pretty much decided that I would just have to start saving pennies until we had enough when we got an amazing surprise.  Casey’s teachers, other families in her class, and my family donated money for her to go.  The appreciation I felt can never be expressed – I hope each person knows what that meant to me.

My mom, the three kids (Casey was 5, Mandy 2 and Rob just a baby) and I spent two weeks in Cincinnati.  Mom took her to one session each day and I took her to the other and it wasn’t fun.  The first few days, she screamed and fought the whole time (we had been warned this might happen – and she hated sitting still that long, anyway).  But, we stuck it out.  And that weekend, after 10 sessions, I asked her what she wanted for breakfast – and she said “doughnut.”

I cried, my parents cried (Dad came down to spend the weekend with us) and she got a doughnut.  I probably would have given her a dozen, if she would say it again!  I counted AIT a success!

When Rob started showing signs of autism, I thought about AIT for him, but dismissed it.  I’m still not sure why, since it helped Casey, but they were so different.  He didn’t have the same issues she did and I never gave that therapy another thought for him.

When casein and gluten free diets became popular, I knew it was something I  needed to try with Rob.  His doctor told me different signs that someone with an allergy to either might show and Rob did have several.  Casey didn’t.  Rob has always had digestion problems, while Casey doesn’t.  So we tried it for several weeks, but unfortunately, we didn’t see any improvements with him.  Since then, he’s lost several symptoms of those allergies, but continues to have digestion issues.

Secretin was another popular treatment for people with autism with digestive issues.  Rob’s doctor actually contacted me about it.  For a long time, it wasn’t available in the US, but when it was, their doctor wanted to do his own study and asked Rob to be part of it.   He did have improvements with his digestive issues.  (I think a lot of symptoms of autism may be the result of digestive problems).

For each therapy I tried with the kids, I did research.  I asked their doctors and I talked to other parents who had tried it.  But – always, always, I followed my own instincts.  Even if someone had amazing results from something, if I didn’t feel right about it, we didn’t do it.  Have I made mistakes?  I’m sure I have, but I can’t change that now.

After you do research and you talk to other parents, you need to ask yourself if you can afford it and how you truly feel about it.  Don’t do something because every tells you it’s miracle.  Do it because YOU think it’s a good idea.

And always ask yourself about the risks.  If there are any, you need to think even harder about the risks/rewards.  Are the possible benefits worth it?  I always think – first do no harm.  If there are no risks, why no give it a try?  The worst that can happen is you waste some time and money.

When you see a new treatment, don’t believe the instant hype.  Let the results speak for themselves.  Talk to your doctor – don’t believe what you read on the internet.  Don’t jump on the bandwagon until you have time to really find out what the treatment is and possible dangers.  And follow your own instincts!